Glioblastoma aka GBM: Recent Episodes
Amber Barbach
Glioblastoma aka GBM is a podcast by the Glioblastoma Research Organization that highlights the stories of our community, from Glioblastoma Warriors, to caregivers, medical advisors, and more. Glioblastoma aka GBM is hosted by Amber Barbach, who founded the Glioblastoma Research Organization in 2018, after her father was diagnosed with and passed away from Glioblastoma. This podcast is an exploration of stories and personal experiences, and is not meant to be taken as medical advice of any kind. If you have questions, always consult with your own medical providers and healthcare team. You are warmly invited to connect with the team at the Glioblastoma Research Organization, and share your own stories and experiences. For more information, please visit gbmresearch.org.
“No matter what clinical trials are conceptualized, no matter what different projects and drugs are developed, you need research to get to a place where these things are thought up, where things are coming into existence.” During her experience with glioblastoma as a caregiver, there were many things Amber Barbach wished she had. Now, she’s giving those things to others so their experiences won’t reflect hers. In this season finale of Glioblastoma AKA GBM, Amber talks about how her family dealt with her father’s diagnosis and subsequent surgery. She peels back the curtains on founding GBMRO.
Hear me talk about:
Finding out. My dad and I didn’t have the best relationship growing up, but after I left home, we built a foundation for a great one. I didn’t know he had cancer until my mom called me months after the diagnosis to tell me he’d just had surgery for a brain tumor. I was in total shock. I’d been teaching in Spain at the time, but I immediately took the next flight home.
Complications. I found my dad halfway off the bed when I finally went upstairs. The hospital had sent him home two days after the surgery. My mother and I had to call an ambulance to take him back to the hospital the next day, and getting him back into proper care was a nightmare. They did another MRI, found that he had a brain tumor. I couldn’t process any of it.
My dad’s stubbornness. During his stay at the hospital, my father was advised to call the nurses when he needed to use the bathroom. He didn’t like that. He attempted to go by himself, which ended in disaster. At home, he was advised to use his walker. He didn’t. This resulted in a trip to the hospital for a head injury that thankfully didn’t cause any brain bleeding.
Hospice care. He gradually became more ill, due to a lack of treatment for various reasons, to the point where we had to hire a private nurse to take care of him when we couldn’t. It was very stressful being a caregiver at 22 years old, but I committed to it. Eventually, my mother and I decided to put him in hospice care. Neither of us were there when he passed - I think he wanted it that way.
Starting the nonprofit. I was, understandably, a mess after my dad died. It had been the worst year of my life, and I was so affected that I didn’t want anyone to ever have to deal with a situation like this. I started looking into nonprofit organizations focused on glioblastoma. They were very few in number. I thought to myself, if you want something done right, you should do it yourself. And so I started the nonprofit. It was an effort to build what I didn't have in hopes that I'd be able to help people with community, information, and overall support.
What’s Next? The next project GBMRO has been working on is a pediatrics project. They are tentatively partnering with another great nonprofit to do a collaborative grant. “My goal is to make brain cancer as aware in society as breast cancer is,” Amber Barbach shares.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“We really imagine this place at the fundamental level as an online sanctuary… you're guided by both medical experts and by other people that you know have been there and want to pay it forward.” Vikram Bhaskaran and Rohan Ramakrishna saw the online healthcare experience and politely said “thanks but no thanks.” Troubled by the lack of information and support for glioblastoma patients and caregivers, they created Roon, a platform that is re-imagining medical content and health communities. Vikram and Rohan join Amber Barbach on Glioblastoma aka GBM to discuss Roon, its mission, and how it’s changing the game for navigating glioblastoma.
Hear us talk about:
Roon. Roon is a medical Q&A platform patients and caregivers navigating glioblastoma can visit to find information, community, and support. Driven by a multidisciplinary team of doctors, patients and caregivers, Roon gathers them all in one place to make a patient’s and caregiver’s experience much easier. There are questions only doctors can answer, but patients and caregivers, having lived the experience of the disease, also share helpful insights and suggestions about the non-medical aspects of navigating glioblastoma.
Roon’s down-to-earth approach to disseminating information. Medical professionals often say not to go to Google when you leave the clinic as people come back more overwhelmed and misinformed, but where else are patients and caregivers supposed to access information? Even so, Google and all the medical websites it shows aren’t particularly helpful when it comes to glioblastoma. Roon aims to correct that with its easy to use features and its interdisciplinary team of glioblastoma experts.
Dividing the experience. Content is typically shared for both caregivers and patients who use Roon, unless specifically directed at either group - for example, only caregivers have access to Roon’s Caregiver Resource. There are subtle differences in the ways caregivers and patients are addressed individually, because the people at Roon understand that everyone’s experience is fully different. They curate a place for everyone’s particular situation.
Creating a new experience. “[Our team is] really tired of the internet as being a source of disinformation and misinformation,” Rohan shares. “They’re really excited about creating a new online healthcare experience where they can foundationally be a part of it.” They are personally handcrafting content because they want the experience for patients and families to be different from what it currently is, he adds.
Moving forward. Vikram and Rohan plan for Roon to grow beyond the small community it is today. Imagine a world where, after receiving a glioblastoma diagnosis, your doctor directs you to Roon, where every GBM expert in the world is sharing information - that’s the world they want to create. They hope to make it even more accessible by going global and translating the platform into several different languages.
What’s Next? Rohan Ramakrishna is co-founder of Roon, Chief of Neurological Surgery, and Associate Professor of Neurological Surgery at Weill Cornell Medicine. Vikram Bhaskaran is co-founder and CEO of Roon, board member at the Museum of Food and Drink, and former Head of Partnerships, Creators and Content at Pinterest. Their current goal is to grow the community of experts at Roon.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
Resources Rohan Ramakrishna on LinkedIn Vikram Bhaskaran on LinkedIn Roon
“Any time anything really bad is happening, I always say ‘it doesn’t matter - it’s not like glioblastoma.’” The agony of slowly watching a parent die from brain cancer is unlike any other. Glioblastoma is a uniquely painful and haunting experience, and siblings Meghan and James McCain know it better than anyone. Their father, former politician John McCain III, died of glioblastoma in 2018, changing their lives forever. James and Meghan join Amber Barbach on Glioblastoma aka GBM to share their experience of losing a parent right before your eyes, and how they live with the grief.
Hear us talk about:
Living with grief. Meghan sees her grief as a demon she can’t get rid of and has to live with. “I contain it, but that doesn’t mean there aren’t moments where it’s encompassing my life,” she shares. Over the years, it’s grown softer and quieter, but it still lingers and flares up at weird times. It’s not easy - just easier to handle. “You’ll be great, and then you hear a song that reminds you of them, and all of a sudden you’re like ‘oh, this sucks.’”
Leaning on Meghan for support. Despite his military training and experience, James was a wreck when it came to keeping himself together throughout their father’s last days. Per his own request, a film crew came down to Sedona to capture the end of John McCain’s life and his experience with glioblastoma. Meghan was a fixture in this venture, and her purposeful direction provided a sort of silent support for James to lean on.
The power of pain as a tool for connection. Pain takes so much from you, but it can also give. For instance, because of Meghan’s experience with glioblastoma, she was able to connect a viewer with the disease with her favorite artist, Taylor Swift. She also got to meet Colin Gerner, a previous guest of AKA GBM and advocate for the disease. “It’s dark, but it’s beautiful,” she says. “Pain can unite us as well, so it wasn’t all bad. This diagnosis… is just the worst; it’s horrible, it’s so hard, and it’s scary, and being able to bond with people over that intensity is a blessing.”
James’ grief journey. It hasn’t been easy recently, especially with his father’s death anniversary coming up later this month. Every day was an obstacle to overcome, and he was already high-strung when, at the worst possible timing, his dog died. Grappling with both losses was too much. “[That] night I was in the laundry room… and I’m bawling,” he shares. “It comes and goes like waves… I don’t think about it, and I think I’m doing great… and then I feel like a sledgehammer hits me, and I fall apart.”
A lesson learned despite, or perhaps due to the tragedy. Watching their father die from glioblastoma brought a deeper perspective to Meghan’s life. Health really is the ultimate blessing, and the things that truly matter are family, friends, and living a purpose-driven life.
What’s Next? Meghan McCain is a television personality, columnist, and author. James McCain has been accepted to attend OCS and become an officer in U.S. Army Intelligence. They carry on their father’s legacy and memory in their hearts and minds every day.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“It’s about figuring out how to work with an individual, how to balance out the body and then get them to adapt to changes.” The answer to healthy living may be right within us all along. Tiffany Meyer is a firm believer in a holistic approach to healing the root causes of health issues, rather than slapping on band-aids. As a certified Oncology Nutrition Consultant (ONC) and Functional Nutrition Therapy Practitioner (FNTP), she works with clients to support them in meeting their health goals. Tiffany joins Amber Barbach on Glioblastoma aka GBM to share insights on how she treats cancer patients and shed light on the importance of balance within the body.
Hear us talk about:
Understanding functional nutrition. Functional nutrition seeks to treat specific health issues by naturally balancing out the body. For example, in treating eczema, a functional nutrition therapy practitioner would investigate food intolerances and gut health. Functional nutrition doesn’t just provide you with a supplement in place of a medication - it gets to the root of the problem and smooths it out.
How Tiffany interacts with clients. She doesn’t tell her clients what they should and shouldn’t eat, instead Tiffany works with them to understand how they feel and what they are willing to do. She guides clients along the decision making journey, leaving the final decision up to them. The only requirement, however, is for vegans and vegetarians. “If you’re going to work with me,” Tiffany tells them, “I’m going to request that you adapt to eating red meat, even if that starts in supplement form.”
Why you should sit down to eat. If you're eating on the go, your body is in a sympathetic state and can’t do what it needs to to digest your food. Tiffany suggests a method you can use to get your body into a parasympathetic state. Lay on the floor, put your feet up on the couch so that your knees are above your heart, and take a few deep breaths before you sit down to eat - this calms you down from whatever you were doing before, and preps your body for digestion.
Gradual change vs. rapid change. Changing lifestyle habits isn’t easy, but that’s a good thing. When you try to quit cold turkey and drastically change everything you’re putting in your body, it struggles to adapt for a few weeks because you are essentially going into shock. The best method is to gradually shift things - a capsule here, a smoothie there - until you build up to changing everything completely. It’s about keeping your body balanced.
Individualized treatment. No two people are the same, so why should their treatment be? Tiffany cultivates treatment plans for each client based on their specific needs and circumstances, because she understands that what works for one person may not work for another.
What’s Next? Tiffany Meyer is a certified Oncology Nutrition Consultant (ONC) and Functional Nutrition Therapy Practitioner (FNTP). She is dedicated to designing individualized nutrition and lifestyle recommendations for each client, helping them heal their bodies from the inside out.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“Make memories, take pictures, do videos, and tell people you love them, because we never know how long we’re here for.” When their youngest son, Liam, passed from glioblastoma, Oscar and Tracy Gill were devastated. Things were already tough with their decision to get divorced, but they gave their marriage one last chance when Liam was diagnosed. The painful journey of watching their child die tied their family tighter together, and though Liam is no longer with them physically, they feel his impact in their lives every day. Tracy and Oscar join Amber Barbach on Glioblastoma aka GBM to talk about their experience as caregivers and parents of an infant glioblastoma patient, and how they coped with the loss of their child.
Hear us talk about:
The first signs. When Liam first started feeling pain from the tumor in his brain, Tracy thought he was throwing a tantrum. He was behaving erratically but because of his speech issues, he wasn’t able to communicate that something was wrong. Oscar found him in bed, unresponsive, and immediately called for Tracy. They eventually took Liam to a children’s hospital, and it went downhill from there.
Getting the diagnosis. The nearest hospital was ill-equipped to treat Liam, so they had to transfer him via helicopter to another one. The doctors explained that there was a mass in Liam’s brain that was hemorrhaging and did their best to operate on him. Within a week they received the news: Liam had grade 4 glioblastoma.
Liam’s deteriorating condition. He was admitted to the hospital and received chemotherapy, and even got to go back home for Tracy’s birthday, but he was soon taken back after suffering a seizure. Liam celebrated his third birthday at the hospital with his family and other patients, but two months later, the doctors were rushing his Make A Wish visit. His prospects had gone from a 50/50 chance of recovery to a 10% chance. Months later, he passed, leaving grieving parents and siblings.
Coping with their loss. Tracy and Oscar’s family and friends were by their side throughout Liam’s treatment and after his death. Still having to parent their other children was hard after losing Liam, and they were wracked with guilt, but they pressed on because they couldn’t stop being parents. Navigating all their grief was a challenge they tackled hand in hand.
Ways they found strength and comfort. The Gills are a praying family, and they have the utmost faith they’ll see Liam again in heaven. In addition to prayer, they practice checking in with each other often and communicating their feelings.
What’s Next? Oscar and Tracy memorialize and celebrate Liam’s life with their page Liam Bear Strong, where they share updates about their grief journey and raise awareness for childhood cancer. Tracy is specializing in child development in hopes to help children through grief.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“Just providing togetherness and hope and understanding to a family who's going through this at any stage of that continuum, is probably the most powerful thing.” Colin Gerner had no idea what glioblastoma was until he lost his brother to the disease. Now, he’s helping people across the country gain access to resources, information, and support. He is the President and co-founder of StacheStrong, a nonprofit that started as a silly but powerful stand of solidarity with his brother as he went for surgery. Colin is joining Amber Barbach on Glioblastoma aka GBM to talk about his experience as a caregiver, and how he used his grief to push for change and advancement.
Hear us talk about:
Colin’s first encounter with glioblastoma, and how he founded his nonprofit. He was unfamiliar with the disease until his older brother, who was 28 at the time and seemingly healthy, had a seizure in 2017. After over 10 hours in the hospital, they discovered a mass on his brain larger than a golf ball. Against all hope, it turned out to be cancerous. He shaved down his facial hair to a little mustache going into surgery, and Colin followed suit in solidarity. It became a silent show of support between them, and inspired the creation of StacheStrong.
StacheStrong’s breweries. One of their biggest campaigns is Brew StacheStrong - where hundreds of participating breweries across the country brew a collaboration beer and donate a dollar per pint. Now, over 300,000 pints are brewed annually, and every dollar goes directly towards research and clinical trials.
StacheStrong’s impact. Since inception, StacheStrong has funded 17 research grants. Colin hoped that this advancement of research would buy his brother more time. Sadly it did not, but Colin still takes pride in what StacheStrong has been able to accomplish. “Hopefully we’re moving one step closer to ensuring the next set of brothers, the next family that goes through this, has a potential resource and clinical trial and breakthrough that's going to help them.”
Colin’s outlet for grief. Everyone grieves differently, and Colin considers himself fortunate to have StacheStrong as an outlet to carry on his brother’s memory. “I grieve through driving this forward,” he shares, “... Fighting for change in advancement and research is what we need to hopefully make sure that that loss wasn't happening in vain.”
Meeting people where they are. Colin has been able to do this through his nonprofit. He has built a community where people can share their struggles, give each other support, and access resources to help them.
What’s Next? Colin Gerner is President and co-founder of StacheStrong, a nonprofit devoted to raising funds and awareness for brain cancer research. StacheStrong has raised over $2,000,000 and funded 17 research grants at top institutions since its inception. Their brewery collaboration, Brew StacheStrong, happens in the spring.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“I believe a combination immunotherapy approach for glioblastoma will be curative…it's just a matter of getting big companies to work together and getting the funding together.” Shawn Carbonell MD, PHD, has high hopes for developing the cure to glioblastoma… but low funding. Shawn, co-founder and president of Cure Glioblastoma, is considered The Brain Surgery Dropout across social media. He left neurosurgery training to invent a new drug for brain cancer, which is now in phase one clinical trial for recurrent high-grade gliomas and glioblastomas. Shawn is joining Amber Barbach on Glioblastoma aka GBM to talk about his experience as a neurosurgeon in training, how his nonprofit is carrying out its mission, and details about his drug.
Hear us talk about:
Discovering a molecule. According to Shawn, this occurred with a little luck and a little bias. He didn’t discover the molecule itself, one of his PhD advisers did; he noticed its function in brain cancer. He went into Oxford studying glial cells with none of the biases of the field, opting to use a top-down approach rather than bottom up, to be open to all possibilities. While observing and analyzing human and animal tissues, he hypothesized that the cells were doing something that might have involved the molecule that his mentor discovered. It was verified with a few experiments.
Developing the drug. Shawn’s career took a few turns after his discovery blew up, leading him to leave the neurosurgery residency to start a biotech company, OncoSynergy. His goal was to develop a drug against the molecule, but there were no resources to aid him in LA at that time. He moved to San Francisco, and got a second postdoctoral degree at UCSF, where he was able to develop the drug as a spinout. It was a seven-year process to get to a manufactured drug and a vial from an idea, then another year after that. The trial was delayed a year due to COVID-19, then the first patient was enrolled.
The for-profit out of the nonprofit. Shawn launched a new biotech company called Brazen Bio as a completely separate entity partially owned by Cure Glioblastoma. It’s an accelerator for new scientists to get their discoveries out of the lab and into the real world to benefit patients. “I created the program that I wish I had in 2009 when I was starting OncoSynergy… we really nurture these scientists and try to create scientist-CEOs.”
The combination immunotherapy approach. The way forward for treating glioblastoma is a combination immunotherapy, multiple drug approach, Shawn claims. He believes that though it will take a lot of optimization, it will create enough synergy to teach the body's own immune system that glioblastoma cells are bad and to eliminate them. Those drugs already exist, and one of them is Shawn’s very own, but the others are owned by Big Pharma A and Big Biotech B, who are resistant to cooperating for various reasons.
The power of social media. Shawn uses his TikTok platform to provide value to his audience, but he’s still figuring out how to do it. His content is building a community of thousands of people who have been touched by glioblastoma in some way. Glioblastoma is a rare cancer in relation to other cancers, but that doesn’t mean few people have it.
What’s Next? Shawn has created the first biotech launch house, Brazen House, to accelerate new scientists in getting their discoveries out of the lab and into the real world to benefit patients.
Resources Shawn on the web | LinkedIn | Twitter
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“I think it’s time we shift a bit. Not saying that we stop focusing on those important cancers, but recognize that there are other forms of cancer, albeit more rare, that still need attention, funding, and brilliant minds for research.” Dr. Ricardo Komotar knew he wanted to study neuroscience as early as the 9th grade. He is a member of the Glioblastoma Research Organization’s Medical Advisory Board, and a prolific, internationally recognized leader in the field of brain tumors. Dr. Komotar is joining Amber Barbach on Glioblastoma aka GBM to share a neurosurgeon’s perspective and expertise on glioblastoma.
Hear us talk about:
How people make their way to neurosurgeons. Most of the referrals neurosurgeons get, Dr. Komotar says, are at their endpoint. Neurosurgeons are typically not the ones making the diagnosis or ordering the MRI scans: about 95% of patients develop symptoms such as a seizure, visual changes, or confusion headaches, and they get worked up by their primary care doctor, neurologist, or oncologist, who orders the MRI. Once there is a tumor, patients typically get sent to the neurosurgeon for evaluation to see if they need surgery.
The protocol for a GBM diagnosis. When discussing a glioblastoma diagnosis with a patient out of surgery, the care team needs to take a team-based approach. If the patient has a potentially malignant glioma, they meet with the neurosurgeon, the radiation oncologist, and the medical neuro-oncologist, who is the one who breaks the news. This is because the medical neuro-oncologist has the most expertise in the treatment, and can answer all the questions a family is going to have.
The challenge in tracking GBM. Identifying the key mutations that lead to glioblastoma multiforme is difficult because there are so many different types. Glioblastoma is a catch-all term for people who have this type of disease, but the reality is each patient’s glioblastoma is unique. Until doctors and scientists discover why that is, there’s going to be a problem - because the same treatment is being used for different tumors. “I think as soon as we can figure out what makes each person's tumor so specific and we can give targeted therapy, that’s when we’re gonna have breakthroughs.”
Mutations. Given enough time, all gliomas will eventually degenerate into a grade four. A glioma is a primary brain tumor - it starts in the brain and stays in the brain. Even the low-grade tumors are mutating, albeit slower than a grade three or four. Over time, they mutate into a more malignant form.
Why other cancers get more attention than brain cancer. Other cancers like lung cancer, breast cancer, and colon cancer are the most common types of cancer, and as such, affect the most people. They get large amounts of funding because they constitute a public health issue. Research and treatment of these common cancers have advanced because of the amount of funding, attention, and brilliant minds that have gone into it.
What’s Next? Dr. Ricardo Komotar is a member of the Glioblastoma Research Organization’s Medical Advisory Board, and a professor of Clinical Neurological Surgery, director of Neurosurgery Residency program, director of the Brain Tumor Initiative, and director of Surgical Neuro-Oncology program at the University of Miami Health Systems Sylvester Comprehensive Cancer Center.
Resources Dr. Ricardo Komotar on the Web | Instagram
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“My mom was like ‘Absolutely not, we are not telling a child he has 6 months left to live,’ which I think played a huge role in [me] staying positive.” David is one of the longest surviving patients of glioblastoma in America, beating all the odds stacked against him since he was a child. He is joining Amber Barbach on Glioblastoma aka GBM to talk about his experience as a three-time survivor, how the support of his friends and family pushed him through, and the importance of being your own advocate.
Hear us talk about:
David’s first diagnosis. David was a healthy child who never got sick, until he got sick. When he was 10, he started getting headaches and deja vu so bad they caused him to vomit - even touching his head induced severe pain. A CT scan that showed a brain tumor. After taking many other tests and being admitted to the hospital, David was scheduled for a surgery to remove his tumor, and it was successful - so successful that the neurosurgeon claimed it was the easiest surgery he had ever done because the tumor fell out of his skull due to its fully encapsulated nature. The pathology of the tumor revealed that it was stage four glioblastoma, and the doctor’s diagnosis was that David would only have six more months to live. His mother informed him of his cancer but refused to let the doctor tell David that his days were numbered.
The return of the tumor. David’s headaches and deja vu episodes came back with a vengeance, and it was discovered that the tumor had returned, bigger than it was before. Surgery was performed, but his chance of survival was even lower this time. Not one to be deterred, David’s mother thanked the doctors and respectfully decided to get a second opinion. He was put in a clinical trial at Duke for a new type of treatment, and the positive attitudes of everyone around him kept him grounded and stable. He gradually got better.
More cancer. The year was 2019, and David started getting pain in his jaw. At first thinking it was TMJ, he went to a specialist who told him he had a severe underbite and needed total jaw realignment surgery. Knowing that underbites were either hereditary or caused by a severe contact injury, none of which applied to him, he got a second opinion, which led to an MRI. The MRI showed that there was a tumor the size of a baseball at the base of his skull. He had a biopsy done, and it revealed that it was radiation-induced osteosarcoma. Experiencing chemotherapy as an adult was a stark difference from when he was a child. There were moments where he faltered in spirit, but he quickly snapped out of the ‘why me’ spiral.
Being your own advocate. If a surgeon or doctor says something to you that you don’t agree with, just know that there are millions of them on the planet - you are bound to find one that’s willing to help you. Don’t just roll over and accept whatever you’re told.
Finding positivity. It is absolutely essential in the midst of any adversity to find positivity, David shares. Some people might handle it through humor, meditation, exercise - as long as you find an outlet to channel what you're feeling into something positive, you will feel more complete. “Cancer is already going to change your life as it is through your health, but it doesn't have to change who you are spiritually or mentally, emotionally.”
What’s Next? David Fitting is an ambassador for the Glioblastoma Research Organization, who has given hope to people all around the world. He’s passionate about motivational speaking and sharing his story to inspire others.
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
One of the main things that affect individuals caring for a loved one suffering from Glioblastoma is the huge amount of time spent on that care: it becomes overwhelming. From handling anxiety to managing burnout to making sure you’re getting enough sleep and building a good relationship with medical services providers of your own, today’s guest has the insight you can use. Dr. Stephanie Silberman is a sleep psychologist with a great deal of experience working with caregivers, she is here to talk to us today about taking care of yourself while you’re taking care of a loved one.
Hear us talk about:
Why burnout is so common among glioblastoma caregivers. The people who need care need a lot of it, and that takes a lot of time - and a huge adjustment of normal routines. Dr. Silberman talks about why it’s critical to continue to prioritize self-care and normal activities.
The extra difficulties that come from being a sole caregiver. Often caregivers don’t want to be a burden on their friends and families. “People like to help others,” Dr. Silberman argues. People are more than happy to support a sole caregiver - friends, distant family, community and even specific organizations are there to provide support.
The many benefits of therapy for helping to process the diagnosis and the realities of caregiving. Being open to receiving that kind of professional help can be a major benefit, and have impacts that go beyond the immediate situation.
Where boundaries can and should exist in the caregiving relationship- between the patient and caregiver, and the caregiver and the rest of the world.
Specific techniques for anxiety that caregivers can help bring some peace, and significantly more relaxation. Sleep is also imperative and Dr. Silberman shares how your sleep can impact your emotion and cognition as well as your physical wellbeing.
How we can be damaging our sleep without realizing it, and some of the steps to take to prevent occasional insomnia from becoming chronic. Dr. Silberman also talks about how it’s important to try non-pharmacological methods first, as medications that help you sleep can cause dependence.
Why journaling can be very helpful - but can also be damaging if you’re approaching it from the wrong angle, or without a specific goal.
How to evaluate a relationship with a new medical services provider - the person who is supposed to be helping you should understand you, care about your story and make you feel comfortable. Dr. Silberman notes it is also important to make sure you are investing enough time to really establish a fit.
Resources Dr. Stephanie Silberman on the web Facebook Twitter The Insomnia Workbook
“[When] you know that your life is a risk, that you’re gonna die and if you don’t [then] it’s a miracle… you change and you find the value of what really matters.” Glioblastoma changes things not just for the diagnosed patient, but for everyone around them, and it can be easy to lose hope when faced with its incurable nature. This wasn’t the case for Chef Lorena Garcia and her family, however. When glioblastoma hit her brother Carlos, they hit back harder with faith and food. A world-renowned culinary master and owner of multiple restaurants, Chef Lorena Garcia is a firm believer that food heals more than the body. She is joining Amber Barbach on Glioblastoma aka GBM to talk about how food intersects with physical and spiritual health, her experience as a caregiver, and how glioblastoma changed her family’s life.
Hear us talk about:
The correlation between food and health. What you eat is not only reflected in your mood, but also in the way you view yourself. Food is a big part of healing the mind, body, and soul, Lorena claims. It’s more than just eating right for your body - you even develop relationships over sharing meals. Everyone is more open to ideas while breaking bread than they would be if they were stuck in a stuffy office.
The strict diets doctors instruct patients to adhere to. Of course, the advice of medical professionals should always be considered, especially when it comes from your primary care physician, but having comfort food here and there in moderation is also okay. “My brother’s diet was very balanced, but I was [also] able to comfort him with things he liked,” Lorena shares.
Lorena’s experience with her brother Carlos’ treatment. His first operation was not successful, but their family didn’t give up. When the doctor gave them a prognosis without hope, Lorena ran in the other direction to find someone who had it. Fortunately, she was able to find a “dream team” of doctors dedicated to helping her brother live on.
How the experience changed her life. Being Carlos’ caregiver gave her a better perspective of the things that truly matter in life, and in their family’s resolve to fight glioblastoma with him, they drew closer. They often spend time together just talking, eating, and feeding the soul.
An important lesson Lorena learned. Everybody stumbles from time to time, she says, and along that journey you find pieces of wood that you either have to burn or jump over - but at the end of the day, they’re all part of the same fire.
What’s Next? Chef Lorena Garcia, alongside the University of Miami and the GBMRO, have launched a brain cancer research project named Project Garcia, in honor of her brother Carlos. The project aims to improve treatment methods and options with novel research.
Resources Chef Lorena Garcia on the Web | Twitter
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“We really have to focus our efforts on blood brain barrier permeability - bypassing the blood brain barrier and then navigating the immune suppression of GBM.” There are many biological obstacles in the way of finding better ways to control, or even cure glioblastoma, says neurosurgeon Dr. John Boockvar, but hope is on the horizon. He is an internationally recognized professional known for his surgical expertise and safe, effective, and minimally invasive treatment for brain tumors, as well as a main character in Netflix’s medical docuseries, Lenox Hill. He is joining Amber Barbach on Glioblastoma aka GBM to talk about his experience as a doctor treating glioblastoma, how the associated technologies work, and what moving forward looks like.
Hear us talk about:
John’s experience with breaking the news to families. Getting a cancer diagnosis is devastating enough, but a glioblastoma cancer diagnosis is heartbreaking. John is a big proponent of giving families rational hope - he doesn’t promise miracles, but informs them that there is hope against the disease and that improvements in the treatment are being made.
The “aggressiveness” of glioblastoma cells. They grow like mold or weeds, John says. You can’t control the spread despite your best efforts; glioblastoma cells spread uncontrolled, because doctors cannot get into the roots of the growth and pull it out.
Early warning signs. “Early detection starts with early surveillance.” Doctors can intervene when early low-grade gliomas that turn into higher-grade glioblastoma are identified. Surgeons can remove them before they transform.
The attainability of a “cure.” Much like there is no cure for high cholesterol or diabetes, there isn’t one for glioblastoma. Instead, John’s job is to find the drug that will control glioblastoma for the entirety of one’s life.
Lenox Hill on Netflix. John had the honor of starring in a docuseries about the ins and outs of his job. Because of the show’s success, neuropsychological and neurological communities have been banding together on social media and sharing ideas. “We don’t live in silos anymore.”
What’s Next? Dr. Boockvar is laser-focused in his approach to brain tumors. He’s working with several people to combine MRI, ultrasound, and intra-arterial drug delivery technology to create an MRI guided focused ultrasound.
Resources Lenox Hill Neurosurgery Dr. John Boockvar on LinkedIn
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“We want all the answers, but that’s why we’re raising awareness: in hopes that we do get to that point where we get these answers for all of us that have questions.” This is a common sentiment among patients with Glioblastoma and their families, especially for Laura Dill, CEO of Slay Society. She is the daughter of parents who were diagnosed with Glioblastoma within 14 days of each other. She is joining Amber Barbach on Glioblastoma aka GBM to talk about her experience as their caregiver, how she coped during their treatment and after their deaths, and how her father’s advice for handling problems became the name of her nonprofit.
Hear us talk about:
New discoveries about Glioblastoma. As far as experts know, it’s not genetic, but there are genetic components to it - which is why they were shocked at Laura’s parents' identical diagnosis.
Taking on the role of caregiver for both of Laura’s parents, and the stress of having five dependents, including her three children. “About those concepts about using your grief as fuel and spirituality - nobody is in a place to think about spirituality when they first get that diagnosis.” Instead, she focused on one small thing she could control every day: having a glass of water.
Circles of support. A patient is at the nucleus of their condition, and their caregiver is there to support them, but when the caregiver needs a caregiver, who’s there for them? There have to be concentric circles of support stemming out from the patient, Laura says, to keep everyone as healthy as they can be.
Important advice Laura applied throughout the GBM experience: do what comes naturally and ignore the rest. As a caregiver, you get a lot of well-intended but unsolicited advice on how to do your job, but Laura kept this advice in mind and acted with intention.
Using her grief as a motivator to live her best life. “You almost feel obligated to do something good with the grief you had to experience.”
What’s Next? Laura’s nonprofit, Slay Society, has finally been approved as a charity. Their mission is to raise money to support caregivers of patients with Glioblastoma, because caregivers are just as important as their patients - it’s a team effort that helps everyone weather the storm. She encourages listeners to learn to accept help from whoever they can.
Resources Slay Society Laura Dill on Instagram
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
“I feel like the luckiest dude in the world.” Maybe not a statement you would expect from someone with brain cancer, but it is how DJ Stewart, star of the documentary Rare Enough has felt at times since his diagnosis. He is a long term Glioblastoma Survivor, and he is joining Amber Barbach on Glioblastoma aka GBM to talk about his journey, and what he has learned along the way.
Hear us talk about:
The moment of receiving a bran cancer diagnosis, and how fast things can move once it happens. It came as a surprise after a previous sarcoma diagnosis and treatment, when it seemed like everything should be going back to normal.
The importance of friends and family supporting you. “I was never without somebody, everybody. Friends were coming in - just an overload of love.” This is why he felt like “The luckiest dude in the world.”
What it was like wearing the Optune Device, breaking several of them, and how it helped to treat the tumor while he was going about normal (for him!) activities.
An important lesson from his grandmother: “When your grandpa got diagnosed, that was the day he started dying.” DJ decided he was going to go in the exact opposite direction.
The determination to keep doing the things he loves, that are important to him, and that make life exciting, always with gratitude.
What’s Next?
DJ plans to make a living in bran cancer advocacy and mental health awareness. His biggest reward has been the thousands of people that have reached out - and “There's nothing cooler than being able to help somebody who is going through some shit.” He reminds us to always find the positives.
Resources Rare Enough DJ Stewart on the web, Twitter
As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.
In this inagural episode of Glioblastoma aka GBM, host and founder of the Glioblastoma Research Organization Amber Barbach shares the story of how Glioblastoma has affected her life. After her father passed from the disease, she was inspired to help others navigating the challening waters of the disease and created the Glioblastoma Research Organization to help fund critical research into treatments and cures, and provide a community for people affected by it. If you or a loved one are suffering from Glioblastoma, you are not alone, and this podcast exists to help open up conversations about the realities of the illness, from diagnosis onwards, by talking to members of the community; survivors, healthcare providers, caregivers and others. Please join us - and subscribe to the show wherever you listen to podcasts.